The Wanderful Life is also the Awful Life

I write this as I wait for my emergency headache medication to kick in. I hate taking Relpax because it makes my head feel as if someone’s smeared MaxFreeze (or Icy Hot, or Biofreeze, or Bengay, or whatever icy burning cream you know) all over my brain; it makes my already aching body hurt all over; and it makes me yawn incessantly if I don’t nap. Basically I’ll only take Relpax if the pain’s gotten to the point I can’t bear it. I can’t bear it today.

And I can bear a lot of pain.

I have dealt with severe chronic (as in unrelenting, 24-7, every single second of every single day of every single moment) pain since I was 16 years old. At the time my headaches began, I ended up in bed for two weeks, waiting for the pain to end. But, I realized there was only one way to end the pain.

No child should have to decide if life’s worth living. I had three choices: kill myself, stay in bed and never have a life anyway, or get up and just live despite the pain that made me want to die.

That’s my life. Living with a pain that makes me want to die except I want to live. Vicious circle, you see? Every day then is my choice to live. Every day is a choice to bear the pain.

I have Hemicrania Continua, a rare trigeminal autonomic cephalalgias class of chronic headache. The name itself literally means “one sided headache.” It feels like demons hammering railroad ties from both the outside and inside of my skull at a focal point on my right side. Sometimes I wonder if I stabbed my skull or bashed my head through a window or through a wall, if that would make the demons stop.

However, my HC doesn’t mind definitions and spreads to my eyes, the other side of my head, my neck, my spine. As a research participant for a University of Texas and Headache Center study, I know from the screening process that I’m an anomaly within an anomaly. A unicorn zebra.

No cure exists. Barely any treatment options exist. You just have to exist with the extreme pain and keep your exacerbating triggers to a minimum. Unfortunately I can do nothing about the weather. My hypothesis is “low pressure outside my skull equals high pressure inside my skull.” That, and low pressure systems reduce the amount of oxygen in the atmosphere, but my brain wants more oxygen. It dumps serotonin as a response, and this triggers the trigeminal nerve, which triggers the inflammatory and pain response. Viola! And I have to wait for the Relpax to numb my demons.

My headache condition most likely stems from my other awful condition, Ehlers Danlos Syndrome (EDS). A known link between headaches, hypermobility, and EDS exists. A Google search will lead you to a plethora of information. Though, I wonder if my asymmetrical hypothalamus derived from my having EDS? My medical search for asymmetrical hypothalamus and headache uncovered a link between it and cluster headache, which is part of the class headache I have. I can’t find anything on EDS and asymmetrical hypothalamus.

As far as head pain goes, hemicrania continua is worse than cluster headache, which is worse than migraine, which is worse than tension. And I have multiple headaches. I have my primary headache HC, plus secondary migraine headaches (classic with aura and hormonal), plus I wouldn’t doubt cervical instability and TMJ dysfunction also contribute to head pain. It wouldn’t even help if I had a head transplant. I need a new body because of the joint pain and damage. Or gene therapy to correct for the defective connective tissue genes.

Except no cure exists for EDS either. Barely any treatment options exist either. I just have to exist with the pain.

Don’t be angry, but I wish you could feel my worst pain for at least 15 minutes. I always joke it would be the greatest biological weapon–it would flatten nations. Nobody could function. I couldn’t at first. It took me weeks to get out of bed, and the rest of my life to try to cope.

But cope I have. It’s why I can have a Wanderful Life and not just an Awful Life. Even though, HC and EDS both qualify me for disability. I might have an invisible disability, but I am not disabled.

I don’t know what it is about me that enables me to live and live well with the pain.

Maybe it’s the Happy Gene? Not all my genes are bad.

Maybe it’s my coping mechanisms. I eat anti-inflammatory foods, low-carb, gluten-free, vegetarian. I drink plenty of water and herbal tea (mint tea may lessen the pain). I exercise. I try to get plenty of sleep. I self-soothe and do as much that brings me pleasure as I can. Pleasure > pain. That’s the philosophy.

Maybe it’s my stubbornness. I refuse to let the pain stop me–though sometimes the pain wins, and I’m confined to bed, writhing and withering away. I might be a unicorn donkey instead of zebra.

Maybe it’s my strength people say I have. I can bear a lot of pain. When it’s all you know, pain is normal. So my pain level 5 might be your 0. My pain scale operates on varying degrees of worse, and I haven’t seen 0 in over 34 years. Some women fantasize about wearing size 0 pants. I’d trade my size 0, 2, and 4 pants for 0 pain.

But that’s not the choice I’ve been given.

I think I cope and live well because I know it will feel more bearable; I will experience pleasure, love, and joy too. Those moments can eclipse the pain. It’s like reading….you disappear into another world and your reality waits. I think that’s what enables me to live a Wanderful Life. I lose myself in the wonderful moments and ignore the awful. Mostly. Sometimes I feel it too acutely to escape the pain, and then I wonder if making brain splatter art against the wall would help…

Only the very back of my head hurts now. I probably should take another Relpax since one didn’t fully work. But I think I’ll just bear it because I know I can. I’d rather not deal with the chest constriction that occurs with a second dose.

Choices. We don’t really have them do we? Otherwise, I choose not to have HC and EDS. But I’m SOL.

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